Please feel free to ask questions and/or comment on items that you are not sure about or would like to know more. While I make every attempt to be accurate and up-to-date, this blog is from a father's perspective and may contain errors. Please do not misinterpret this information as being how experiences with retinoblastoma will occur or should occur. This blog is simply about one beautiful little girl and her daily battles with a terrible disease.

Tuesday, September 30, 2008

I'm getting frustrated to the supreme with labs all over the area. It seems that STAT orders are quite easy to misplace, and even have a tendency to disappear into thin air. Go figure. We still haven't found last Thursday's blood counts. So yesterday Gracie had to get her blood drawn again. The actual draw went quite well, but then they neglected to process it as stat. So today we finally got her counts. The platelets are 210 so she doesn't need to get her blood drawn again until we go to Houston for chemo!!! It's a good thing her counts weren't low because if she needs a transfusion we kind of need to know about it right away and not 2 days later - hence the STAT order. You'd think that labs would be more careful with such things because if her counts were critical that would be a fairly serious liable on the labs part. Wouldn't you say? (No we're not the suing type, but it's still has potentially serious legal consequences for the lab - I thought in the USA they were ultra cautious about such things for just that reason) Legal issues aside that could have very VERY serious medical complications for our little Grace, which is really my primary concern. However, no pokes for a week and a half, that's pretty exciting news. Of course that was only after we went for our flu shots this afternoon. Grace and all of her close contacts are highly encouraged to get the flu vaccine. Of course it has to be the dead vaccine so that meant shots for the whole family and not just the nasal spray. Our 1 year old son isn't able to get most of his 1 year vaccines as they are live and none of Gracie's close contacts are allowed to have any live vaccines for the next who knows how long. That's saying something if little miss hard core pro immunizations isn't vaccinating her own kids. Never say never, eh.

We've been thrilled to welcome my mom back today. And this time she even brought my dad along!! This was actually their vacation that they had planned since May, or somewhere thereabouts. It's been planned since long before we knew Gracie had cancer, it just happens to coincide with round 2. Lots of things just seem to "happen" to work out in our favour.

We got a couple of letters in the mail for Gracie today. One was from Georgia and another was from California. I'm not sure if I know them personally or not (they may be relatives of James' that I'm just not familiar with) but we really appreciate them. They're very cute cards. Also we got our first contact from the Make A Wish foundation. Yes, Gracie gets to make a Wish and we're all pretty excited about it. And what does she want for her wish...why to go to Walt Disney World of course. It's the most popular Wish granted. 5000 kids are sent to Disney by the Make A Wish foundation a year. We don't know any of the details yet we just got a letter telling us they'd meet with us and do their best to grant her wish. It kind of scared me when they first said that Gracie qualified for it as you have to have a life threatening illness to qualify. It drove the idea home for me of how serious this situation is. But now that I've gotten used to the idea I'm glad she gets something good out of all of this. Gracie is thrilled.

Sunday, September 28, 2008

Yesterday, I received an e-mail from a family that, last Tuesday, received the news that their 4 month old son, Noah, was diagnosed with Bilateral Retinoblastoma. They found this blog after their diagnosis and sent me an e-mail to tell us of their situation. These next couple days are going to be huge for them as Noah will have an EUA and MRI to find the extent of the tumors. We pray for Noah and his family, especially over these next couple days. It is nice to know that this blog has been of some measure of service to another family.May God bless and comfort Noah and his family, as He has so abundantly blessed us.

So I probably should have posted on Friday when the blood went missing but I guess since we still do not have blood counts today is OK. We went down to the lab on Thursday for Gracie to have her blood work done. The order is for results to be given to the oncologist STAT because it determines if could effect Gracie's treatment plan. So the oncologist expects the results that afternoon as soon as they are available. We also get the results from our doctor to know if there is anything that we have to do different. The lab is 30 minutes away and causes Gracie quite a bit of discomfort (no lab seems to want to do finger pricks as the Houston medical team suggests, so all blood is drawn from a vein in her arm).Anyway, on late Friday morning Stephanie has not heard from anyone about the blood counts so she calls the Nurse Practitioner in Houston. They tell us that they have not seen the results but will track them down. A few minutes later they call back to say that the labs will not release any information and Stephanie will have to track it down. So Stephanie calls the lab where it was drawn and they assure her that the blood has been sent away. Stephanie calls the lab that processes the blood and at first they do not know where it is. Then they find the blood but no mention of a STAT order is with it so they had not rushed it. They say they will but neither us nor the medical team in Houston has the results as of today (Sunday). So we really do not know if her levels are high enough that we do not need blood work tomorrow or if we should be concerned about other problems.It is obvious that her platelet counts are lower than usual as she bruises very easily. She loves to run and play with her sisters (and her dad), so ends up falling or crashing often. So her legs and arms have lots of bruises. Hopefully tomorrow will be a "free" day and we will not need to go to the lab again.We are finding that Gracie is losing more and more hair when it is brushed. You cannot tell from looking at her but it is obvious when you are brushing that more is coming out. The bulk of her hair loss is likely to happen after her second round of chemotherapy. It is sad to think of her losing her hair but it is good to see that the drugs are doing their job. So we will just keep cheering the chemo on and praying for it to win the fight against her cancer!As always, the love and concern of our many friends has been incredible. We wish you all the very choicest blessings.

Thursday, September 25, 2008

The last three days have been crazy and full, but normal crazy and full. It has been nice to feel a little normalcy again! So I just thought I would leave a quick post to say that things are going well. Gracie is feeling great, she no longer needs her daily shots (until after the next round of chemo on Oct 9-11)!! Gracie even got outside to play at the park with some friends today and loved it.As always, we appreciate all of your love and support!

Sunday, September 21, 2008

I look back over the past month and realize that so much has changed in my life. It is amazing to think that one month ago today Stephanie and I were sitting down seriously talking about the possibility that Gracie may need to lose her eye. Only one week prior to that we were basically oblivious to the major health challenges that awaited our little girl. Those days seem like a lifetime away.Since then I have learned much about a disease that I never knew existed. A disease that seems to be indifferent to a child's upbringing, nationality, religion, gender or ethnicity. A disease that brings, at a minimum, much sadness and heartache for families and friends. Then, if undiagnosed, untreated or allowed to spread, it can bring death. Gratefully, I have also learned that, through the miracles of modern medicine, retinoblastoma is treatable. Survival rates are extremely high in the industrialized nations. Not only do children with retinoblastoma survive but they have the opportunity to thrive in our society and make a real difference in the world. I am so very grateful for that knowledge.More importantly I have learned a lot about people in the last month. I have come to more fully appreciate family. I cannot say enough about Stephanie, my wife. She has made certain that everyone was taken care of and felt loved. I am glad she chose me those 8 years ago when I asked her to marry me.I have been blessed with a wonderful loving family (both from my birth family and the family I married into). Though I have lived far away ("far, far away- and over the mountains," as Gracie likes to say), I have felt close and in some cases been close. Knowing that I have never been alone, even when times were toughest, has kept me from getting too down.Our church family has reached out in so many ways. I cannot count the number of ways that people have reached out in love and service. I do not even try to list them for I know that I will miss something.I am blessed with awesome neighbors. People from my community have become a wonderful source of strength each day. Each has their struggles and lives but all have stopped to lift and help me and my family. We are buoyed up by their kindness and charity.I also have found true kindness and love from friends. Expressions of support and concern have been overwhelming. I have been blessed to work with people that not only said they care, but show it. I have received messages from old co-workers and school associates telling me of their love and support. People from all types of religions have informed us of their personal and congregational prayers for our Gracie and her family. I know that family friends are faithfully praying and working to help Gracie beat her cancer as soon as possible. I know that the wonderful medical team, which helped get Gracie's CT scan so quickly, has been given special permission from their employer to follow this blog from work. Their support along with the love and support of so, so many others is evident in Gracie's life. My family and I truly do feel of the support and love. I have found that, just like retinoblastoma, true friends are found across nationalities, religions, genders and ethnicities.

I am confident that all will be well for our Gracie. I have been richly blessed to have Gracie in my family. She brightens each and every one of my days!

To all of you that check daily for the new updates, I must apologize for my tardiness in yesterday's post (I just posted it tonight at 8PM). I know some of you were waiting for it, however, I just got busy doing other things. The fact is that this past week has included some days that felt normal again. Tuesday, for example, felt a lot like Tuesday and not so much like "The day before Gracie starts chemo" or "The day Gracie's siblings get their eyes checked to rule out retinoblastoma." Over the past month, titling the daily postings with the date and day of the week helped me remember where I was in relation to everyone else around me.Looking forward to the next couple weeks, it seems that we have some fairly regular days coming. Life seems to keep marching on and in some ways I feel like I have been standing still and watching the procession pass by. Now it seems that we are ready to get back in line and push forward. Sometimes I am still uncomfortable with the notion that I am becoming comfortable with Gracie having cancer but I also think that establishing normalcy in our family life is important for everyone- including Gracie.Having said that, I am not necessarily planning on blogging about Gracie's daily routine, as I have in the past. While I will keep blogging and mention the things that are going on in regards to her battle with cancer the posts will likely be comprised less of Gracie's travel log. If Gracie's routine for the day is no different than usual, I may not even post that day. Of course, this is subject to change at any time.

So today, Gracie and I left in the morning to go to the Children's Hospital. Dr. L had told us to go to the hospital for more antibiotics and blood work, just to be sure that Grace did not still have an infection. Gracie had slept much of yesterday afternoon/evening and been up and down all night, however in the morning she was quite perky. We got to the hospital at 9:30ish and went straight to the oncology unit (as per our instructions). Gracie literally bounced onto the unit. She was trying to jump from one colored tile to another down the hallway. It was a very fun game for both of us. She had been singing earlier (some version of "We are a Happy Family" mixed with "Old MacDonald"), but had now settled down a bit and was simply playing her little game. She told the oncologist (Dr. S) and the nurse that it was "Nice to see them." They said it was nice to see her too but we would have to go and check-in near the front doors. The nurse put some LMX cream on her port-a-cath (to numb the area) as they were planning on accessing the port for blood work and injections. Gracie did not like the cream at all but it did not take long.Once at the check-in desk we found that the hospital had not entered Gracie in their records, despite her having been there several times. So I had to give all of our information to the kind man at the desk. This took 30 minutes or so and all the while this man had the sniffles and coughed occasionally. He was kind enough to wash his hands and leave quickly to cough but it felt strange to have been sent to him when we were trying to prevent an immuno-compromised Gracie from getting sick. Anyway after that little event we went back up to the oncology unit and directly into a treatment room. Gracie asked Dr. S if she would like to check her heart. Dr. S said that she did. Gracie chatted with Dr. S about checking her eyes and her ears and her mouth. By the time she was done Gracie and practically directed to whole exam. Dr. S chatted with me about what had happened and then said that she saw no point in accessing the port today. We would have blood work on Monday and, since the fever had not reoccurred, it was unlikely that there was an infection. So Gracie got the Dora sticker that she had really wanted and we merrily waved Good-bye to everyone before leaving. It seemed like a lot of work to have nothing done but we were happy Gracie was feeling so well.The rest of the day was a pretty normal Saturday. Gracie felt fine and we did things like get groceries, pick up mail, try to catch up on some work things that had been undone over the last few days, etc.Hopefully we do not make a habit of needing to go to the cancer unit between treatments but we are glad to not have to make the three hour trip to Houston. Gracie is taking all of the hospital visits and injections very well. We are so pleased that she is so strong and happy. Thank you all for your love and prayers. She has and does greatly benefit from your continued support and concern.

Friday, September 19, 2008

What excitement today! I was feeling really good today after a night's rest, had dropped my oldest child at school and was nearly at work- when I got a phone call from home saying that Gracie's temperature was 102F. We were told by our doctor in Houston that if Gracie ever ran a fever of more than 101F that she should go directly to the emergency room. So I turned the car around and headed back home. We dropped kids off at a friend's home and headed to the emergency with Gracie. I felt pretty silly doing this since we would have never considered taking a child with a small fever to the emergency before and Gracie was really doing quite well with it. In fact she was mad that she had to come and could not stay at our friend's home. By the time we got to the hospital (30 minutes later), Gracie no longer had a fever. So we stayed in the parking lot and called the nurse practitioner and Dr. M in Houston. They both said that we still needed to have her looked at and Dr. M even said that we would likely need to be admitted for 2 days. So then we called Dr. L, our oncologist here (who happens to work right next to the emergency room). Her office said just to come over there and they would run the tests and do what was needed. So we went into the cancer clinic. Now they have told us that whenever Gracie has a fever that we should never go to emergency here but rather take her directly to the cancer clinic (where we went today) or to the cancer unit at the hospital (if it is not regular office hours). In Houston the emergency room has special procedures for cancer patients but at the hospital here we are just suppose to skip the emergency room all together.

Gracie did not want to wear the mask they gave her but was really excited to see the child life specialist and her doll Sammie again. Gracie helped Sammie take medicine and get all the pokes to make him feel better. Gracie had blood work done and got checked out by a nurse on the unit. She was fine throughout the visit and loved watching Dora the Explorer. She did not like having her port accessed but was really good once it had been. I do not blame her one bit for that, I was nervous with them sticking a needle into her chest. She is a brave little girl and unfortunately knows how to work around an IV pole quite well.

They gave Gracie some antibiotics just to be safe and lots of fluids so that she was not dehydrated. She was very kind to all the nurses and doctors. Some football players from the local college football team even came in to say hi to all of the patients. Gracie was not as impressed as many of the kids there and mostly just ignored them to watch Dora the Explorer but it was kind of them to stop in.

So to summarize we left our home for the hospital before 9AM and arrived home just after 3PM after having been in the cancer clinic most of that time. They also want to do more blood work tomorrow and so we need to go to the cancer unit in the hospital tomorrow for more.

One of the big reasons that they were concerned was that her blood counts were at 900 yesterday. So today when they did the preliminary tests were between 1250 and 1300. They were not really sure why the discrepancy but think it was probably elevated today because Gracie was trying to fight an infection. It is really good that Gracie was able to try to fight off the infection in her condition. So after the blood work they told us that we probably would not need to admit Gracie to the hospital for the night. We were happy about that but really want to make sure we do whatever Gracie needs.

So hopefully this is not what will happen one week after each of Gracie's chemotherapy treatments but I know that things could be a lot worse. She came home from the hospital and fell asleep, only to wake up at 10:00PM. Now she is having a hard time sleeping again as she would rather talk to me or play with the dog. Even when it is time for Gracie's beautiful, bright eyes to shut, I cannot help but think how blessed we are to have her in our family. She just makes me so happy with her big smile and her constant energy.

Thursday, September 18, 2008

I'm posting for James again. This time it's because James is sick too. He woke up and took my mom to the airport at 5am then he took our oldest daughter to school and when he came back he said he didn't feel so great. He's been nauseated all day, and our second oldest daughter decided to join him (after she felt just fine yesterday). So today we've had two sickies which became more of a worry to me after the cancer clinic in Houston called to tell me that Gracie's ANC (absolute neutrophil count - necessary for immunity) was lower than they'd like (900). Great, those numbers dropped quicker than expected. So sure enough she started saying that her tummy hurt tonight just before supper time. She slept on the couch for an hour and when I finally decided to carry her upstairs to her room she decided it was time to throw up all over me. Thank heavens I was able to get her to the bathroom before that happened. It's much easier to deal with on tile than on carpet. Especially since the carpet has just been cleaned. After I got her all cleaned up I called the oncologist on call in Houston to ask what I was to do with her. She doesn't have a fever yet so we're just to keep her at home and try to keep her hydrated and comfortable. If her temperature reaches 100.4 we're to get her into the nearest emergency. So my job is to check her temperature frequently through the night and until she's feeling better. Poor little thing. But the good news of the day is that we found out that insurance has now approved her zofran so we're able to at least give her something for her nausea tonight!

Gracie still hates her shots but seems to be taking even that in stride. All seemed to go well today. Gracie's sister felt much better and we have received confirmation that her blood can be drawn at the cancer clinic here. We will see how that goes tomorrow.

Wednesday, September 17, 2008

I guess Stephanie beat me to the punch this morning. Gracie had a wonderful day. She loved playing with her little brother and it was hard to keep her away from her sick sister. Hopefully all will be fine today and Gracie will not catch whatever her sister has. Stephanie, as always, has been wonderful in arranging everything that Gracie needs. While there is always excitement in our home, it seemed relatively calm in regards to Gracie's cancer. We hope that continues and those drugs keep working to get rid of the cancer so that both of her eyes can be saved!As always, we appreciate your support and prayers.

I've decided to do a followup post now that I've become more rational again. I've got in touch with the cancer center here and we're working on getting things arranged to do all of Gracie's blood work there from now on. I'm glad I didn't tell off the lab tech who drew her blood on Monday because I simply didn't need to. As I said earlier, I was an RN. I know anyone can make a mistake. Even today the shot I gave Gracie wobbled a little in my hand and didn't go in as nicely as I'd have liked (she kind of moved when I put it in and bumped my hand, and subcutaneous injections are not hard to give) but I still consider myself a good nurse. Or a good retired nurse at least. There isn't anyone in their job/life that doesn't make mistakes. And sometimes they're stupid mistakes. I'm still not happy that she dismissed Gracie's tears as "nothing" but as a parent there is a line between being your child's advocate and just being difficult. It's not even that fine of a line. But if I get the habit of just being a difficult shrew I'll soon become that patient who no one wants to care for, whether they're good or not. You do catch more flies with honey after all. I'm being Gracie's advocate by simply not taking her back there again. We now know that they're not really experienced with children, never mind children on chemotherapy. So we've learned and we'll do differently next time. If I need to in the future I'll say something, but this time I didn't need to.

Gracie is doing very well today. Her older sister is sick though, so we're trying to keep them separate. I have people lined up who are willing to take my children when they're sick to keep them away from Gracie, but I'm hoping her blood counts aren't too low after this first round so that she isn't too compromised, that way a quarantine won't be necessary. It's hard for me to think of sending my other children out to stay with other people just when they need me the most. Sick kids want their mom. But there are no signs of illness in Gracie right now, so we're hoping it stays that way.

Monday, September 15, 2008

Well, today Stephanie took Gracie to have her first blood work done since chemotherapy. This needs to happen each Monday and Thursday. We thought that since they would have to be done so often they would prick her finger and take blood that way. However the place that our pediatrician sent us to would only take blood from her arm. This could become quite problematic with all the blood that needs to be taken. I am not a nurse or doctor but am told that a vein (or at least a specific location) is accessed it becomes less accessible in the future. So if Gracie needs blood work twice a week pretty soon it will be difficult to take blood at all. Anyway, we are trying to find a place that will poke her finger instead to get the necessary blood work but with Houston still shut down from the Hurricane it has been difficult to get access to our doctors.

Anyway, so Stephanie took Gracie to get this blood work and was thoroughly unimpressed with the approach they took. Apparently they failed to hit the vein properly on the first attempt and Gracie was pretty sore. Then they had to get another nurse to actually do it right and get the blood. We do not know the results from the tests even though the sheets we received from Houston say to make sure we record them. The lab would not release the information to us. I am really not sure what is the proper way but you would think that the lab people and doctors should know and be able to tell us what to do.

To be completely fair, I was not home most of the day today (I am really trying to get back into my regular routine at work), so all of this frustration is kind of second hand. Stephanie has been so good to take care of all that and carry the bulk of the load. I am so lucky to have found her and convinced her to stick with me! Stephanie's mom, of course, is helping out a big deal by staying with us over the last 2.5 weeks. That has been a real lifesaver.

Gracie did not like the needles (she had three pricks today because of her shots at home then the two at the lab) today but was her normal cheerful little self during the rest of the day. When I came home in the early evening she was the first to come running to the door shouting, "Daddy, you're back! You're back!" It was good, as always, to see her.

Stephanie's Note - Okay, James tells me I'm going to get a reputation here. In case you haven't guessed I'm not quite as soft hearted as he is. Actually I have to try really hard not to be very outspoken. To give myself credit I have improved drastically in this regard though, and I'll have to admit that that is largely due to James' influence in my life. With that said I need to embellish on why I was so unimpressed with the lab staff today who took Gracie's blood. I can forgive the two pokes (although how they missed such good veins is a mystery to me - and I was an RN and have accessed veins numerous times so I can be critical here). What I'm so angry with was that they dug around for so long fishing for the vein on the first poke all the while saying "Oh, it's not so bad" as she's crying and saying "I don't want it". HELLLOOO have you ever had someone fish around in your arm for a vein?! Yes it does too hurt and to tell a three year old it doesn't is just plain ridiculous. Her pain is valid, don't deny her that! The injections I have to give her hurt her too, and I'm not exactly thrilled about that but I don't tell her they don't hurt. I know she needs them so I give them anyways. But I never lie, I tell her that it'll hurt but that I'll be fast and it's all to help her get better. Maybe she doesn't understand that either, but at least I haven't lied to her. I was told that was part of being a good nurse. If you say things won't hurt when they really will the child will be afraid of everything because they'll never know if it will hurt or not because they don't believe you any more. Besides, if you fish like that for veins twice a week it won't take long until there is nothing left to fish for. This was one situation where I wish I hadn't learned to control what I say, but it's probably a good thing that I did. I'll promise you though that that woman will NEVER touch my child again. Gracie was so brave through it all. Even though she was crying she held nice and still, even when she would have been justified in kicking the lady in the nose. In case you're wondering the cancer clinic staff told me that usually they don't like to draw the biweekly blood work from the port a cath because they can usually do it with a finger poke. So they'd rather not access the port which is quite a procedure as well for just a couple of ml of blood. And there is no way I'm letting this lab near her port anyways.

Basically I think the lab staff are entirely ignorant about how to deal with pediatric patients, never mind pediatric oncology patients. If I have to I'll drive to the Cancer Center twice a week to avoid dealing with them again. I've already got a call into the cancer center here to see what they recommend we do for Thursday. I wouldn't be so angry if this was just something that she needed to get done once a year for a physical. Kids get over things quickly. But this is her life for the next 6 months. In that time she'll have had far more blood drawn than I've had in my entire 30 years. I'll do what I can to make this as easy as possible for her. Thanks for letting me vent, I feel much better now even if I did solidify a reputation for myself.

Sunday, September 14, 2008

I just wanted to include a cute story that I heard today at church. As a friend was asking me how our stay in Houston was I told her that Gracie kept jumping from the couch to the bed and it was driving me crazy. It was quite a daring leap and I was sure we were going to add a couple of broken limbs to our list of ailments. She started to laugh and said she figured it was her 3? year old son Logan's fault. Apparently Logan associates being healthy with being able to jump really high. So when he says his prayers he prays that Gracie will be able to jump really high. Obviously his prayers are being heard because she seems to be a stellar jumper.

We're so grateful that we have so many people praying for us and thank you for all the comments you leave us. They really do make our day a little brighter. Sometimes it's nice to know that people are thinking about you, even if they don't know you personally. So don't worry about pestering us with too many comments. I don't think that's possible. We really do enjoy them as they remind us of how many people love us and our little Gracie. Thanks for all the support.

Church this morning was kind of lonely without Gracie but it was comforting to know that she was not exposed to any of the bugs that were probably floating around in nursery today. She got dressed in her Sunday dress this morning and had to be distracted when the rest of us left. Lucky for us Grandma is so entertaining and so wonderful! I am sure Gracie had lots of fun spending some quality time with her little brother and her grandma. Gracie seems happy and healthy but is really coming to hate the time in the morning where I sit her on my lap and hold her because that is when she knows that Stephanie is going to give her a shot. It is hard to see her cry but I know it will help her in the long run.

Today is the 3rd day since her first treatment. We hope and pray that the drugs are doing their job and killing her cancer!

Saturday, September 13, 2008

OK, Stephanie does not want me to post the first one but I think that it is hilarious. That is Gracie with her crazy face and it was taken right before the second picture above. I am posting that picture so you can see the opaque whitish mass in her right eye. This is not the leukocoria, like the last post, but you can see the actual tumor through her pupil. This is kind of what we saw the first time. We are much better at noticing now and know when to look. The way I got a picture was to have relatively low light and have her look away from the camera when I took the picture so that I got a better angle on the tumor. I think that since the time we first saw it and now, the floating tumor has gotten bigger and thus more visible, but for sure we are more aware so see it more.

Today was a great day for Gracie! She sure did not like her shot but never seemed nauseated or run down because of her treatments. Her blood counts and energy levels should be the lowest on days 7-10 of the 28 day cycle. That puts it next Friday through Sunday next week so we shall see. Also, something that I have forgotten to mention here, Dr. P (her ophthalmologist in Houston) classifies her right eye as class D retinoblastoma and her left as class B retinoblastoma. There are a total of 5 classes (A through E) with E being the eye is unsalvageable and must be removed and class A being that the eye can be treated without chemotherapy. In the past (and in other hospitals) class D eyes have also been removed because treatments have not been very effective in killing the cancers, however Houston has the expertise to treat and possibly save that eye.

Below I am posting the classification table from an article in the Orphanet Journal of Rare Diseases volume 1 of 2006. (Orphanet J Rare Dis. 2006; 1: 31. Published online 2006 August 25. doi: 10.1186/1750-1172-1-31.) Here is a link to the article (the classification table I have put here is table 2): http://www.pubmedcentral.nih.gov/articlerender.fcgi?artid=1586012

The ABC classification

Group A: small tumors away from foveola and disc

• Tumors <3>

• Located at least 3 mm from the foveola and 1.5 mm from the optic disc

Tonight we went out to eat to celebrate being done the first round of chemotherapy (courtesy of Grandma- thank you very much Grandma). It was nice to have Gracie back for her first full day at home. She was running around and playing like always. I took a few pictures at the restaurant and have posted four of them with the times taken. Picture #3 is the first time that we have caught leucokoria (a white reflex rather than red reflex in the eye) on camera. If you click on the pictures you should open a page with the pictures much bigger and it will be evident in the right eye. I posted the other pictures to show that a) she is adorable and b) usually her eyes look completely fine. The picture four seconds before shows her bright eyes and the pictures 53 seconds prior shows excellent red reflexes in both eyes. The completely white eye is only seen with flash photography. When we can see it without a flash it is more like a hazy white substance that floats across the pupil. So with Gracie only after the diagnosis of retinoblastoma and hundreds of pictures have we been able to capture this common indicator of retinoblastoma. I thought some of you would be interested to see it.

Anyway, as I mentioned Gracie has been her normal self. She loves to jump and play all day! The only indications that she was undergoing cancer treatments is the seemingly constant fight for prescription coverage, giving Gracie a shot in the morning, giving antibiotics and laxatives during the day and finally the episode of nausea and vomiting just before supper. She had been feeling fine all day and was jumping around playing with her sisters when suddenly she wanted to sit and rest. After she was was given anti-nausea medication (zofran) and was really cuddly for half an hour before returning to her bouncy self. She did not eat much supper but loved her chocolate milk and playing with me all throughout supper.

It is sad to see her sick but good to see that she is coping reasonably well. We continue to be amazed at and grateful for the support that has been shown for Gracie and us (her family) on a daily basis. It brings such comfort even when things are difficult. People have given of themselves in so many ways; from generously giving of their time and means, to offering cards or e-mails or notes of comfort, to just being there to listen and understand that life sometimes is just not easy. So thank you all for all that you do and the many ways you serve and bless us.

Stephanie's note - Zofran is the medication that we're currently fighting with insurance about. Someone noted in the last couple of days that we never seem mad or upset in these postings, perhaps that's because we have constant target for aiming our anger at AKA our insurance company. Zofran is extremely effective at controlling her nausea and without it she'd be very sick, but insurance figures it's not medically necessary. Obviously whoever made that call didn't have a three year old receiving chemotherapy. The way I'm feeling right now I don't think they even have a soul. So yes, we do get angry and upset but we have someone very concrete that we can direct all that anger at, all the idiots working for our insurance company (James says I can't name the specific company - he's far too nice). I guess this means my neighbour's trees are safe.

Thursday, September 11, 2008

Hi, You've got a guest blogger here. I just thought some of y'all might like to know a little more about how chemo actually works. I'll give you the same crash course I got. Chemotherapy drugs work by inhibiting cell division, each particular drug works in a different way and that's why you use different drugs - to try to hit it from every angle. In particular they target cells that divide rapidly ie. CANCER! However there are other cells in the human body that divide rapidly and so they are also killed by the drugs. Mostly these are hair, mucous lining, and blood so I'll list what the chemo does to these cells.

1. Hair - This one is kind of obvious. You lose your hair, explaining why people receiving chemo are bald. We were told that we probably wouldn't see much significant hair loss until after Gracie's second round.

2. Mucous linings - In particular the lining of the GI system is effected all the way from the mouth to the very end. She can develop sores anywhere in her mucousal lining, this sometimes could make it difficult for her to eat unless her food is soft. This is why Gracie needs special mouthwash four times a day to keep her mouth clean so that it is less likely to develop sores (also a potential port for infections).

3. The blood - First I'll do an over view of the components of blood. You've got your red cells, white cells and platelets. All of these components are effected by the chemo and their counts drop as a result. The counts are usually at their lowest 7-10 days after chemo therapy is administered.

The red cells carry the oxygen which is needed for energy. When her red cells drop her energy levels will drop too. Plus she'll look pale.

White cells are required to fight off disease. She will be immunocompromised throughout her treatments. As such she needs to take antibiotics three days a week for at least a year. A germ that would do nothing to a healthy child could land her in the hospital for IV antibiotics or worse. In the words of the oncologist she could go from being just fine to the ICU in half an hour. ANY signs of illness needed to be taken very seriously and any one who is ill need to be kept away from her. This is why she'll be taking a break from church for the next six months. She's still allowed to play with other kids though, we just need to make sure they're all in good health. And wash, wash, wash your hands!!!!

Platelets are required for your body to heal after cuts and scratches. They kind of collect at the site and form natures bandage. When her platelets are low she'll have a more difficult time healing, and open skin is a gateway for infection making it a double whammy.

Her counts for all of these blood components will definitely be down during chemo, if they get dangerously low then she'll receive blood or blood product transfusions. This is why she gets blood tests twice a week to determine what her counts are. In order to help her counts build themselves up again she'll receive injections (subcutaneous for the medical type) of G-CSF once a day for between 7-14 days after every round of chemotherapy. This shot helps her counts recover quicker than they would on their own.

In addition to these effects there are other common side effects for each of the drugs which she's receiving. Not the least of which is nausea, it's kind of legendary with chemotherapy. Fortunately they have a very effective drug to combat this now - if only we didn't have to fight with insurance to get it. The nausea can occur at any time during the months she's being treated. If the drugs don't control it then she'll need to be hospitalized to receive IV fluids.

All of these effects listed above have a cumulative way about them. Meaning we can expect them to get worse with every round of chemotherapy. So we might only notice a slight decrease in energy this round, but after the 6th round she may just sleep for 2 weeks.

The good thing about her being so young is that she won't have to deal with the depression that most older people with cancer face. She's young and oblivious to it all. Even with all that they were doing in the hospital she was so cheerful. They were checking her blood pressure every 15 minutes during the chemo and she'd just say in her perky little voice "Are you hugging my arm again?!" Okay when she was asleep she wasn't as impressed with it, but she's usually very happy. I think adults could learn a lot from visiting a pediatric oncology unit. Some of these little kids are so very very sick. I could hear one of them heaving from all the way down the hallway. My heart went out to him/her and their family. And yet they throw up and then move on and smile even when they still feel yucky. It's so amazing. Obviously happiness is a choice, it's not something you're dealt.

It's so good to be home. I was headed out of Houston as the National Guard was coming in. Rows and rows of military vehicles were driving in and helicopters were circling about. I hope the city weathers the hurricane well. We'll be remembering all of our new friends we made in Houston over the last couple days and pray that their families and homes stay safe. Also that the medical center stays running well so no one's care is delayed. Thanks for your support,

Well, our happy bouncing girls was back in action. She arrived home just after noon and before long her and her sister had torn up the living room. She was so excited to see everyone and make sure everyone heard her say, "I'm back!" So she was and we were glad to have her. Then we proceeded to look at the schedule for the coming month. Anti-nausea drugs as needed, antibiotics three days a week, shots to increase blood counts for 7 to 14 consecutive days, blood tests at least twice a week, special mouthwash 4 times a day, etc. Then we also need to try to keep her from hitting the area of her chest where the port-a-cath is, this is difficult given her tendency to jump off of and onto anything she can find. But she is sure a delight and we are excited to have her back in our home.

Everything seemed to go fine in Houston and Gracie will have round 2, the second weekend (Thurs-Sat) in October. Then this afternoon, we headed out to pick up prescriptions for all the medications that our oncologist prescribed. The pharmacy did not have the drugs on hand so we said that we could wait until tomorrow. We went home and an hour later got a message from the pharmacist saying that two of the drugs prescribed were not covered by our healthcare plan and would be expensive. Some compromises had been made and we could get a portion of one of the drugs at a reduced cost but the other drug was not covered. Why our plan does not cover anti-nausea or pain-relieving ointment for pediatric cancer patients is beyond me but we made several phone calls to our case manager at our insurance company. She gave us some suggestions to finding the drug at a lower cost and ideas on trying to get the drug approved and/or covered some other way. After several attempts to do so there was little progress made. Apparently this is a battle with the insurance company and pharmaceutical benefits company that will go one for more than a couple hours. I do not know if there are similar drugs covered or not that our oncologist could prescribe. The hurricane in Houston has cut of some of the contact with the medical staff there for now. We are confident that it will all work out but it is still just one more thing to think about when there are important things, like Gracie, to worry about.

Thank you all for your prayers and love. We have especially appreciated them over the past week and Gracie seems to have started this process on a really positive note!

Everything went well with the treatments early this morning. No adverse reactions were noted and Gracie is back to her excited little self! Gracie and her mom left Houston at 9:30AM and we cannot wait to have them home!

For Gracie and her mom, today was a lot of waiting around in the cancer center, going for walks, talking with some nurses and doctors, watching TV and playing with toys. We found out that the future treatments will start on Thursdays with an EUA and injections of Carboplatin into the area around the eye. Then Fridays and Saturdays will include IV injection of carboplatin, vincristine and etoposide for stretches of about 2 to 3 hours (the drugs are administered in succession). After the Saturday treatment Gracie can come home. In some ways that is a really nice schedule and makes the work week a little less hectic. This first treatment did not include the EUA so the treatments that are going on as I type are the final ones and Gracie will be coming home tomorrow morning! I am excited that they will be beating the hurricane home and even more excited that Gracie and her mom will be home again! I have missed them so much, even though I have talked to them frequently.

Gracie has been her normal perky self. Her mom told me she had to work to keep her from jumping from the couch to the bed in the hospital room. Gracie has loved playing with the cars on the unit (see the picture above) and talking with anyone that will listen.

On a bit of a scary note the nurses told Gracie's mom that they are concerned that Gracie may have had a reaction to one of the drugs last night. As they reviewed her charts they noted some serious coughing near the end of the treatments (this is a potential indication of an anaphylactic reaction). So as a precaution they have the medical staff alerted on the unit and they are going to monitor her very closely. We pray for her continued safety during the treatments and that our cheerful little girl will make it through the night without further complications.

Wednesday, September 10, 2008

I am just going to briefly answer four questions that were posted in the last couple of days. I will do my best and my wife may add/change answers if I am wrong:

Can you show a picture of the opaqueness in the eye?

No we actually cannot because we do not have one. I spent some time today going through hundreds and hundreds of Gracie's pictures (thanks to the miracles of digital photography) over the past 6 months. I could not find one where there opaque mass is visible. This may be because the visceral seeds were new when my wife first saw them, or it may simply be the fact that they are really hard to see. Even now unless her eyes are dilated and the light hits them just right it is difficult to see the any evidence of the cancer. Most of the pictures just show the big beautiful eyes that we know and love with Gracie. There were two pictures in the last month and a half that looked a bit like the opaqueness that we have seen but I think it was more the reflection from the area around the pupil and not from the cancerous mass in the eye.

Is it preferable for Gracie to be asleep during the treatment?Well, yesterday (rather early this morning) it was. However, the biggest reason they were done then is that the consent forms were misplaced and then waiting on delays in the pharmacy. Ideally I think they would have administered the medication within a couple hours of Gracie's admittance to the unit (which would have been late afternoon yesterday). She then would have played games or watched movies through the treatments. Sleeping through the treatments is probably pretty nice though.

Is it typical to feel nauseous or unwell during administration or does that tend to come later?I think the short answer to this is that they expect Gracie to feel nauseous both during and after the therapy and so were just trying to minimize that with the drugs before the chemotherapy.

Do the injections of carboplatin happen under a general anesthetic at some point?Yes, these injections will likely occur on the first morning of the next round(s) of chemotherapy. An EUA is scheduled each cycle to see how effective the chemotherapy has been over the course of the 28 days and while she is still under anesthesia the carboplatin will be injected around the eye.

Gracie started the actual chemotherapy after midnight last night and ended the treatments at approximately 2:30AM. Apparently she slept through most of it and woke up pale but chipper. I have attached a picture of her from this morning.

Tuesday, September 9, 2008

Today had to be one of the hardest days that I have had to concentrate on anything. Gracie and her mom left for Houston yesterday. I had a really difficult time sleeping knowing that tomorrow might be the beginning of chemotherapy for Gracie. That is really what I wanted but it was still very difficult to think about. I tried to have a somewhat normal routine but basically waited anxiously by the phone and e-mail to receive any word. I knew that Gracie needed to check in at 7:15AM and spoke with her mom at 5:45AM as they were getting up and ready to leave the Ronald McDonald House. Apparently all went well with the kidney tests in the morning. Basically they injected some tracer chemical into Gracie and then took tests after 1 hour, 2 hours and 4 hours to make sure the kidneys were doing their job. So Gracie and her mom ate during one break, checked in with the cancer unit to make sure chemotherapy was a go this evening on another break and took the long 2 hour break to go clear out and clean up their room at the Ronald McDonald House. Gracie is her regular chipper self telling all the doctors and nurses that it is "nice to meet ya!"

Of course the tests were performed in the basement and with no cellular reception so I sat beside my phone but did not get any information until after noon when the tests were all done and they were on their way to be admitted to the cancer unit. Grace and her mom spoke with Dr. M, our oncologist and found out lots of good information. In addition to the drugs I already spoke about (Vincristine and Etoposide in the August 29, 2008 post), they will also be using Carboplatin. Basically, from what I understand, this drug messes with the cancer cells ability to reproduce by linking DNA strands and not allowing them to line up properly during cell division. The cells then cannot divide and the cancer stops growing and starts dying (YEAH!). This drug is not as commonly used for retinoblastoma but recent studies have shown that it may be effective in treating it. The doctors would like Gracie to be involved in a clinical study where Carboplatin is not only given intravenously but injected into the space around her right eye. This injection will have high concentrations of the drug and should therefore allow more of the drug to get into the vitreous fluid in the eye and battle the vitreous seeding. If you remember, the seeding is the hard to kill part. Dr. M had spoken of this treatment before but we did not realize that it was still in clinical trials and Gracie could be one of the first groups to use it this way. The injections will not occur until the second and/or third rounds of chemotherapy. I am excited about the prospect of saving her eye but it is difficult sometimes to think of having a new medical trial started on your baby girl. I want only the best for her and I know we are having some of the best medical professionals looking after her. That gives me a great deal of confidence.

Once in the cancer center, Gracie was given fluids intravenously (see picture below with tube into her chest). This was in preparation for the chemotherapy drugs. However some mix ups have occurred in that consent forms were temporarily misplaced. As of 10:30PM Gracie was being given some anti-nausea medication in preparation for the chemotherapy but had not started the chemotherapy. Once started it will go for 2 straight hours. The drugs contain some toxic chemicals and will be in her system for up to 30 hours following the administration of the drugs. So in caring for Gracie during and following the treatments we need to take special precautions to limit contact with any of the toxic materials.

My wife is in good spirits when I spoke with her and Gracie loves that she has sole discretion over the movies that she watches and the games she gets to play. So for now, life is wonderful for her.

It is hard to be away from Gracie at this time. I am glad that my wife can be with her and care for her. I miss them dearly but find peace in knowing that we are fighting back. I am confident that Gracie will win this fight. There are so many who are giving so much of their love and support to her, how could she not win?

Monday, September 8, 2008

Finally, this week is here! The last week has seemed like the longest week of my life. Just waiting for Gracie to get on with chemotherapy. There were some times when life felt normal but seeing doctors and occasionally seeing the white tumor float in front of Gracie's iris reminded me that we were still waiting for chemotherapy to start this week so that we could get rid of it.

Today was so great! We really did not think that we would find anything with the EUAs today but I was still so nervous. We have had enough bad news in the surgical unit that it was hard to wait for news of the EUAs today. It was not really that long but Dr. O came back with all good news. In fact Dr. O had thought my son would have some muscle delays in the eye but she could not find any evidence of that!

Gracie received a spot at the Ronald McDonald House in Houston! So that helps to reduce the costs of staying away from home. They had wanted Grace and her mom at the House at 6PM however the EUAs took longer than expected. They could not get there until 8PM. I phoned ahead to make sure they could still get in. The manager was sympathetic and assured me that they would get in and a room would be ready. Grace and her mom arrived just before 8PM. There were little problems checking in. It is a great opportunity for us to have such a nice facility close to the hospital for Gracie to stay at. Tomorrow morning at 7:15AM Gracie starts testing on her kidneys. Then hopefully chemotherapy can start in the afternoon.

It is kind of tough to see all the other children at the Ronald McDonald House who are going through treatments. It hits home when you know that pretty soon Gracie will be one of those kids. Modern medicine is truly miraculous but that does not make it any easier to see kids suffer. We continue to hope and pray that Gracie's cancer can be controlled and destroyed quickly. We appreciate the love and support that we feel on a daily basis from people near and far. Thank you all so much!

Sunday, September 7, 2008

Each week we write a letter that we send out to our family. In order to avoid repetition and as our hearts are so full of gratitude today after such a wonderful fast Sunday we decided to include an except from the letter which my wife wrote last Sunday. We are so thankful for such a wonderful support system with our friends and family. Thank you all for what you have done for us. Thank you for the anonymous card that we received today. We figure you know who you are if you wrote it and we very much appreciate it. I realize that not all of the readers of our blog have the same religious beliefs as our family and some may see the following list as something other than "blessings". But we also know that there are many of you of all different faiths who are praying for us and we are truly grateful for that. We hope that you will join with us and choose to acknowledge that our blessings are truly evidence of God's love and works, not just mere coincidences.

"This won't go down in history as our families best summer. First we discovered that our son had a neuromuscular disorder and then we discovered that Gracie had cancer. Perhaps James and I are the most genetically incompatible couple in the whole world. But I just want to let you all know how absolutely wonderful our life is. The hand of God is so clearly evident each day of our life. We feel the peace that only the gospel brings. Even when we're distraught, we feel that peace. How wonderful the gift of the Holy Ghost is! I just wanted to point out some of the miracles and blessings we've seen in the last month.

1. James told me in June that we needed to go to Canada this summer. I told him several times over the next couple of months that I didn't want to go as I was too busy with our son and his appointments. I put him off time and time again. Finally he simply said one night that we needed to go and he wouldn't feel good about putting things off any longer. Had we not been in Canada we wouldn't have got in with an ophthalmologist near as quickly as we did as there is a several month waiting list to see one. If we didn't know how urgent it was we would have been quite content to wait for that appointment. It doesn't hurt, she can see just fine...why would we think it would be so serious. The worst my mind could conjure up was a cataract. How wonderful that James' is so receptive to the promptings of the spirit so that he can bless and care for our family.

2. Dr. L was so kind as to open his clinic 1/2 hour early to take a look at Gracie. And then he spent time researching and consulting with pediatric ophthamologists to discover that this was possibly something very urgent. How grateful we are that James' parents just happen to be good friends with one of the only ophthalmologists in the region.

3. I have a background in nursing and feel very confident in navigating through the health care system. I'm learning about American health care pretty quickly too, and am figuring out how to effectively get what I want/need from insurance. My somewhat assertive personality is coming in pretty handy in this case also as I'm finding it necessary to do a considerable of amount of work coordinating all of these doctors and hospital visits. We already have a good case manager because of our son and they just opened a new case for Gracie with the same manager.

4. Because of our son's eye problems in his first few months we already knew Dr. O here. We didn't have to worry about going home and getting a referral from our pediatrician. I called Dr. O directly and her scheduler was able to set up an appointment on our first day back from vacation. It's almost unheard of to schedule an MRI and EUA back to back without at least 3 weeks notice. We were able to get it done in less than a week. That way she didn't have to go under anesthesia one more time and we had a confirmed diagnoses on our first working day back from vacation.

5. I was so angry at that one tumor that has pulled off the retina as if we have to enucleate (surgically remove) that eye it will be most likely because of that one tumor and the visceral seeding around it. However if it didn't pull off I would have never noticed anything and that tumor that is dangerously close to the optic nerve would have grown right into it. Once it hits the optic nerve it has a highway to the entire nervous system. Retinoblastoma has a survival rate of greater than 90% if it's contained in the eye, if it leaves the eye it drops to 7%. One of the key ways to diagnose retinoblastoma is the absence of the red reflex (red eye that you see in pictures). To this day Gracie still has her red reflex. When our pediatrician was looking in her eyes while she was in getting her throat checked (she came down with strep throat on Thursday) he still can't see the tumors on her retina. The only thing visible, unless you're a highly trained specialist - ie. ophthalmologist, is that floating tumor. There is absolutely no way I could have detected it any earlier without having an EUA done, and that wouldn't have been done in less there was a reason for it. So to summarize - that floating tumor and the seeding may be the cause of her losing her right eye, but it is absolutely the only thing that has saved her life.

6. I noticed that eye was opaque and it concerned me, and then mentioned it to the right people AKA James' dad.

7. James' dad didn't just think I was a hypochondriac but went on and talked to the right person about it. (Okay maybe he thought I was a little paranoid but he still took the right actions).

8. We just happened to move a block away from the best friends in the whole world who were willing and able to take our kids at 0530 without any advanced notice in the midst of a move. In Juli's words she's glad that Josh was social for once and introduced himself to James and offered to give him a ride to stake priesthood meeting and that she was brave for once and decided to stop by the house to introduce herself and her girls while that priesthood meeting was going on. They took care of the girls while we were in the hospital when our son was born, when he was at all his appointments in June and now through this. We have been truly blessed to know them and will miss them being so close.

9. We both have parents who are willing to come down whenever we need them. We definitely have the best two families in the world. I love my own family so much and there is no way on earth that I could possibly have better in laws. I enjoy their company and have so much fun with them. I can't ever remember feeling uncomfortable or out of place with them (since marriage) and know that they love me and my family very, very much.

10. Our ward has showered us with love and support. Grace is kind of the teacher's pet in nursery (with all the teachers) as she is such a sweet little happy thing. We can't even begin to mention how much our ward has done for us.

11. With all of those tumors in Gracie's right eye not a one affects her fovea so she can still see out of both eyes.

12. I woke up at 0430 Wednesday (August 27) morning and felt it was urgent that we seek a second opinion before we enucleate that eye when we'd already decided to skip that appointment.

13. We are the parents of 4 wonderful children

14. We have seen great improvement in our son's physical abilities over the last month. He crawled up 2 stairs and pulled himself up to standing! (This is a big deal for us).

15. I am married to James - genetically compatible or not we've got the best love story in the history of the earth. Plus we're still best friends - in good times or bad.

16. Both of the universities James was seriously considering attending are within 4 hours of major retinoblastoma centers (Houston and NYC) giving us relatively easy access to some of the best medical care available in the whole world.

17. Gracie was in a lot of distress when she was born and it was a miracle that she survived her last couple of weeks in utero as well as her delivery. She's proved to be our miracle baby once and we know she can do it again.

I could go on and on as our blessings are so bounteous. Some of these blessings obviously haven't just occurred over the last month, but it's clearly evident that the Lord prepares us for our challenges long before they ever come. If this isn't evidence that God has a plan I don't know what is.

We have some very specific things that we're praying for:

1. That the cancer doesn't spread while we're waiting for chemo to start on Sept 10.2. That the chemo and laser treatments will be effective and that we'll be able to save both of her eyes

3. Far more children with retinoblastoma die of secondary cancers than they do of retinoblastoma. Because her cancer is in both eyes she is highly prone to developing other future cancers. We pray that this cancer goes away and NEVER EVER comes back!4. That Houston is not effected by any hurricanes or other problems that may cripple the city and delay Gracie's treatments.

We have many other things we're praying for each and every day. But these are the ones relating directly to Gracie and her cancer at this time."

So I think we have of the stuff we need to send Gracie and her mom to the hospital next week. We ran a few errands today and picked up several bottles of disinfectant for hands to place around the home. We do not want Grace to get sick because someone carried around bacteria on their hands. We also picked up a binder/journal to collect and record a medical history for Gracie. We were at the doctor's office this last week and noticed that the family of a small boy had a specific binder to keep all of his medical information to be sure that the parents knew exactly what was going on and so that they could show it to doctors. Since Gracie's list of doctors and procedures has gotten fairy long in the past two weeks we decided that a medical binder would be an excellent idea. We also picked up another cell phone so that I can communicate with my wife while they are away. We also have a lot of scheduling to do and want to be sure that we do not double book an important appointment so invested in a smartphone. Hopefully now any appointments made at home or on the road will be updated on all our calendars and we can avoid future conflicts.Gracie is still pain free and a really happy little girl. She and I were playing outside yesterday and she was climbing and jumping all over. I was trying to ask her to stop jumping but she really did not understand why. I would say, "Gracie, I wish you wouldn't jump from so high." To which she would look me in the eye and say, "But please daddy? Pleeeeese." So I would try to ensure that I assisted her jumps to prevent too much jarring of the port-a-cath site. It is often hard to think of next week because she is just our wonderful little 2 year old. She gets mad if she cannot be the first to open doors or has to have a bath when she does not want to. She also forgives so easily and is so loving and loyal to her siblings. Pretty typical stuff for a 2 year old. She was playing with some other kids yesterday and it was hard for me to hear the other parents talk of their 2 year old who was playing there and think of how different the next week held in store for the two children. There was no anger, just sadness that such an innocent little girl, who seems so happy and healthy, was about to be given powerful drugs to stop a cancer she does not even realize she has. However, we know that this next week and future chemotherapy treatments will go a long way to saving our Gracie. We are glad for the miracles of modern medicine and are confident that Gracie is getting some of the best care available.

Now, on a completely different note. There was a question or comment about genetic testing for our family. Genetic testing is a critical step in understanding retinoblastoma (particularly bilateral retinoblastoma). This testing will be performed and will hopefully help us to understand if my wife or I are carriers of the disease or not and also if any of our other children have increased chances of having developing retinoblastoma. I am not sure when this testing will be performed but the hospital in Houston (where Gracie is to receive treatments) assures us that this is part of the regular testing for families such as ours. We are happy about that and want to proceed with the testing however we do not know when. This will help to determine the frequency and detail required in future eye examinations for our children, so the sooner the better as far as we are concerned. However, the EUAs scheduled for our children on Monday is still recommended (and will proceed) in order to get an immediate look at their retinas and mitigate any potential problems now before they have time to cause any permanent damage. Now that is at least my understanding of the situation at present for genetic testing and the EUAs on Monday.

Lastly, as a point of clarification on the purpose of the blog. I am pleased that so many people are finding the blog informative and helpful, though the readership has grown bigger then I ever really expected. Getting information to those who want to know more about Gracie is one of the purposes of the blog. Another purpose in writing these things is to help others with similar life situations to better understand the feelings, pressures and challenges that come on a daily basis. As such I have tried to honestly express frustrations, blessings, disappointments, worries, etc that occur in this process. These feelings are unique to me and informed by my specific beliefs and life experiences. I do not apologize for that or pretend that everyone will have the same feelings, however when the initial diagnosis of retinoblastoma occurred, I found some measure of comfort when I heard success stories from others with retinoblastoma. Thus I would feel somewhat ungrateful if I did not honestly share our story with at least one person who could benefit. So please do not misunderstand the blog as any sort of solicitation for sympathy, money or other things. I speak of sadness, worry and financial frustrations only because, during Gracie's battle with cancer, these things do exist and they are part of our life. I like to think of myself as an optimist and would rather not discuss the negative emotions that occur however, in keeping with the purpose of the blog, I have tried and will continue to honestly share the joys and the struggles I experience throughout Gracie's battle.

Friday, September 5, 2008

Well, after an early morning at the hospital (we were there at 6:15AM), Gracie had the port-a-cath inserted. They gave us pain medication for her as they said that she would be in pain. However, typical Gracie seemed as perky as ever throughout the day and tried to be just as active as always. She is suppose to be careful after the procedure for a couple of weeks but it is hard to tell a little girl to ease up on her playing. She did crash at supper time and slept for a bit. That is not helping tonight as she has no desire to go to bed now. Everything seems to have gone fine with the procedure and the hearing tests showed that she has great hearing at present. We are lined up for the kidney tests next Tuesday and Chemotherapy starting on Wednesday through Friday.

We also got a call to schedule our other children for EUAs. It is quite frustrating to hear how much things like that will cost. As I have said previously, it is important that everything needful is done to ensure our children's health and so the costs are secondary. However, because of the diagnosis of retinoblastoma all of the other children must undergo testing as a preventative measure. However the way health-care and insurance providers function these procedures are for different children so, at least for our policy, are subject to new deductibles and new maximum limits for the year. Given the necessity to use hospital facilities and anesthesiologist, this becomes quite costly. I will stop my rant about the health care system but suffice it to say, while some things are not as important, they can add to the pressure one feels in these situations.

I recognize that we have been extremely blessed to have the insurance coverage and resources to take care of Gracie. I am truly grateful for that and find peace in knowing that things will work out. Gracie is doing wonderfully and is going into chemotherapy very strong. We are excited to push forward with treatments. It is difficult to get back into your normal life when little seems normal anymore. However, everyday I am amazed at how many reach out in friendship to do all they can to help my family. We are very blessed and appreciate your kindness.

Today was a waiting day. We were waiting for a phone call that told us Gracie's port-a-cath insertion would be at 7:45AM tomorrow. We are waiting for information on Monday's EUAs for the other kids, waiting to find out that the hearing test can be performed tomorrow with the port-a-cath insertion, waiting to find out if chemotherapy might start on Tuesday (right after the kidney function tests) next week and just waiting for chemotherapy to start so that we can start battling the cancer.So it was great news that the hearing test can be performed tomorrow along with the port-a-cath insertion and we are excited that chemotherapy may get an early start next week, so that Gracie and her mom can return home on Thursday night or Friday morning. That would be especially exciting for me!We continue to feel tremendous support from people from all over. Today we found out that members from our local LDS (Church of Jesus Christ of Latter-Day Saints) ward planned to fast and pray specifically for Gracie's well-being this coming Sunday. I am grateful for the love and faith that this shows. I am also confident that God does hear each humble prayer and that Gracie can only be helped by such a fast.I offer a brief explanation of a fast as I know many readers may have different definitions for a fast or be unaware of the practice. In this context fasting is going without food or water for a period of approximately 24 hours. This usually entails not eating or drinking from after supper on Saturday until supper on Sunday. An essential part of the fast is prayer. Prayers are given throughout the fast and help one focus on the specific purposes of their fast. In LDS congregational fasts are held once a month, usually on the first Sunday of the month (individuals are free to fast at any time but one day a month is designated as a time for the entire congregation to fast together). However, each individual member is free to select the purpose of their fast. Oftimes one fasts for help with life decisions, health of family member, safety or recovery of other individuals, etc. Additionally the cost of the meals missed during the fast are donated as fast offerings to help provide life's necessities to those less-fortunate. Sometimes a congregation will be invited to unite in fasting for a common purpose and such an invitation was extended to fast for Gracie in her battle with retinoblastoma.We are again grateful for the support of so many individuals and the love they have shown. We have heard from many of their prayers and fasting on Gracie's behalf and are confident that Gracie will be blessed through your continued show of faith and love.

Wednesday, September 3, 2008

Today was frustrating in many ways but ended on a real positive note for us. We found out early in the morning that the appointment today regarding the port-a-cath was simply a consultation with the surgeons and not the actual insertion of the port-a-cath. So Gracie and her mom met with the surgeons to discuss what they were going to do. We already knew what the plan was and Gracie had already gone under anesthesia twice in the last 9 days so we were pretty clear about things but I guess it never hurts to prepare. The actual insertion will be on Friday some time. Then we have confirmation of the EUAs for the other kids on Monday at some yet to be determined time.

That is when the great news comes in. Tonight we got an e-mail from Gracie's cancer coordinator! We were beginning to think that it would be my wife for the duration. However, they actually do have someone that tries to coordinate everything from doctor's visits, surgeries, chemotherapy, lodging, back-up lodging and your general comfort while going through this process. Our coordinator sent us lots of phone numbers and information on next weeks chemotherapy sessions and plans. She sounds like she will be in regular communication and help to sort out any further issues. It was nice to hear from her!

Still it was a hard day when we realized that the procedure on Friday will be the first of many that starts causing our little Gracie some significant pain. After the insertion of the port-a-cath we will need to be careful in playing with her so as not to disrupt it or dislodge it or at least not cause her any further pain. Soon after chemotherapy starts and that is not exactly what anyone plans for their little innocent almost 3 year old. Also the time and resources necessary to go through chemotherapy with Gracie are beginning to weigh heavy on our minds. We are so blessed to have good friends and caring family members that significantly ease those burdens however they remain pressing for our little growing family.

It is interesting to see how her siblings and their friends react. Today as I walked my oldest child to school we met two friends at the entrance who immediately asked, "Does Gracie have a plastic eye yet?" The question was posed innocently and I answered, "No, not yet." To which a spontaneous and unanimous cheer erupted from these two friends, "Yeah! Hooray!" I laughed and began cheering right along with them. We are truly blessed and there is much to cheer about these days, despite our few little troubles.

As always, we thank you all for your prayers and your support. They mean so much to us and we have seen your exercise of faith benefit our family in so many ways. I was trying to list all of the churches, families and individuals that were praying for us the other day but had to stop because the list was too long and I would surely miss someone. It is truly humbling to see how a little girl's life can be impacted by the love of so many wonderful people. So again- Thank you all.

Tuesday, September 2, 2008

Today my wife and her mother took all of the children to Dr. O for dilated eye exams and prep for such exams under anesthesia. Dr. O was very excited to know that Dr. P had a treatment plan that included potentially saving the eye. She had high praise for that group and seemed interested to know how things work out. She told my wife that the team here did not have the experience or expertise to recommend such a course but was glad that Dr. P's group was so close.The tests went fine today. There were no additional signs of retinoblastoma in any of the other kids or my wife (apparently Dr. O had a look at my wife's retinas as well). Next monday EUAs will be done for the kids under 6.The plan is to get the port-a-cath put in tomorrow, however nobody called back tomorrow to tell us how early we were to be there or even confirm what time the procedure was. It is frustrating as there were lots of scheduling issues today that my wife had to take care of but tomorrow's procedure has not been confirmed for us. We were able to speak with our insurance representative as Gracie has a case manager. It was confirmed that while the pediatric surgeons that we need to use tomorrow are normally not covered by our insurance, they would be partially covered tomorrow. It is nice to have a case manager to answer insurance questions but it is still confusing as to how much and when things need to be paid. Also it seems like there are alot of people going to be involved in Gracie's care and yet no one (except us) is coordinating between everyone. I am not sure if that is just our perception but it seems like things only get done after we (mostly my wonderful wife) makes a phone call or two.Anyway, we still eagerly anticipate starting chemotherapy. It feels like that is the beginning of the end for cancer in our little girl. We are finding more and more support from friends and family each day and appreciate it very much. It continues to help and sustain us.

Monday, September 1, 2008

Today, being a holiday was quite a slow one as far as getting things arranged with doctors. My wife and I spent some time trying to accomplish some administrative tasks for Gracie's first round of treatments. Arranging vehicles, phones, children are all kind of crazy with chemotherapy, school, pre-school, work, medical appointments, other appointments, etc. We are also trying to work out the best way to keep track of all the schedules while Gracie and her mom are in a different city. We will all be making appointments and do not want to double book important events.

We are anxious to tomorrow morning to roll around so that we can speak with doctors offices and clear up some of the arrangements for the next week. We also have appointments for Gracie's siblings to see our pediatric ophthalmologist, Dr. O tomorrow morning. Since bilateral retinoblastoma is hereditary, they all have a greater risk and need to be monitored. This is a start to that process. Any kids under 6 years old that have family history (which suddenly we do) need to undergo regular EUA (exams under anesthesia) as well. So the EUAs are scheduled for a week from now as well. Hopefully all is clear with the other kids. If not it is better to know sooner and avoid any real growth in the cancer.

Gracie seems to have now figured out that there is something wrong with her eye. She sometimes pretends to reach into the corner of her eye and pinch something. Then she will show it to you and say, "Look, I got it!" If only that was all we were looking for.